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Category Archives: Charitable Organisations

An exciting new development in surf technology is making headway for wheelchair users to experience the waves first hand.

Cerebra Innovation Centre, in partnership with Surfability UK and Tonic Surf Therapy, have begun designing bespoke surf boards for people with limited mobility and neurological difficulties, allowing wheelchair-bound adrenaline junkies to get out of their chairs and onto the water.

Kai Lewis is a thirteen year old boy from Port Talbot, who suffered a stroke at age one and consequently lives with cerebral palsy. He helped to test out the new products recently out on the water at Llangennith Beach in West Wales. Onlookers watched as Kai surfed his first wave, with a little help from his tandem surfer, a trained surf instructor riding on the back of his board. The board is a pioneer surf product, with a supportive “bucket” seat and space on the back for an experienced surfer to steer it in the right direction. Kai had a very successful day out on the water, catching waves with a huge grin on his face and his mother looking on proudly.

Image: Surfability

Surfability UK (surfing for disabled children) and Tonic Surf Therapy (working with surf and ocean therapy programmes in the UK and the USA) have teamed up with Cerebra Innovation Clinic to develop this product. Surfability UK was founded in 2013, as a response to increasing demand for inclusive surfing lessons that would allow people living with disabilities to experience the surf first hand. They design specific surf lessons and experiences for groups and individuals based on their needs, in a safe and supportive environment. Amongst their equipment are Tandem Surfboards, Surfing Helmets, Buoyancy Aids and Beach Access Wheelchairs. They also use innovative communication with IPad software to ensure clear communication and instruction between teacher and student.

They aren’t the first to make progress in making surf more accessible to wheelchair users, but they are the first to create individualised products for specific conditions. Ross Head, CIC Product Design Manager, says that “since its inception, CIC has made a tremendous difference to the lives of many children with neurological conditions across the UK. The unique strategic vision for CIC means that we are able to respond to individual requests for help and can make small numbers of bespoke products that focus heavily on individual requirements and inclusion into society.”

Overall, the day was a great success, supported by top weather conditions and a supportive team by Kai’s side. His mother, Leanne Lewis, expressed her pride, saying “hopefully it’s going to get more children out of their wheelchairs… The more you can get them out the better.” Most exciting is what these continuing innovations in surf and mobility technology represent for the future, for wheelchair users, and for surf lovers alike. If you’re a surfer, or you simply love the water, you’ll know the thrill of the wave, and the residual calm, and how the water becomes like a meditation when you immerse yourself in it. Everyone deserves to experience that feeling, and now they can, thanks to CIC, Surfability UK and Tonic Surf Therapy.

Arthritis Research UK are a charity committed to preventing the onset of arthritis, developing a cure for arthritis and transforming the lives of those with arthritis.

This National Arthritis Week, you are asked to share your stories of living with arthritis to help more people get closer to living free from the pain of arthritis.

Arthritis Research are also raising awareness that on the 25th November, the Government will set out its spending plans for the country in the Comprehensive Spending Review. This will decide how much money is spent on everything: from welfare to healthcare, to support for research. They urge you to tell your MP they must fight for a fair deal for people with arthritis during the Spending Review. Register or sign in to email your MP, and give people with arthritis in your community the champion they need.

The fair deal that is being campaigned for is to make arthritis a public health priority, demanding a commitment to protect and increase the amount of money councils receive to maintain the health of local resident. Protecting the welfare benefits for disabled people with arthritis and committing to protect and then increase investment in medical research to support the fight to cure arthritis.

You can lend your support to National Arthritis Week by sharing your story here. Your stories will be used to guide the research Arthritis Research UK fund in 2016.

Martha Lane Fox has spent her career as a champion for digital technology. She was the co-founder of Lastminute.com, the travel website that was of the first dotcom boom, which floated at an over inflated share price. The boom then turned to bust, causing the share prices to crash. She then spent three years building it back up with her co-founder, Brent Hoberman, before selling it, making herself a cool £13m in the process!

Martha credits her insanely privileged education, an unbelievably loving home life and massive amounts of luck to her success. But she has also experienced more than her fair share of bad luck. In 2004, shortly after leaving Lastminute.com, she suffered a horrific car accident in Morocco in 2004. She was not expected to survive. She broke 28 bones, smashed her pelvis, suffered a stroke, spent over a year in hospital, and is still dealing with the ongoing health issues it’s caused. She is left needing to use a walking stick, with constant pain and has had 28 operations in total.

With a passion for social causes, she has thrown her energies into the deep and troubling inequality in this country, believing that technological inequality exacerbates social, educational and financial inequalities and is a leader of digital culture and access in the UK.

For three years Martha was the government’s digital champion, working for Gordon Brown then David Cameron and was appointed a crossbench peer in the House of Lords in March 2013. At 42, she is the youngest female member of the House of Lords; she celebrated her nomination by tweeting whether she’d get free cocktails and a set of nipple tassels (the Soho Society supplied the latter)! She is currently chair of Go On UK, a coalition of public and private sector partners that are helping millions more people and organisations online.

She has supported Reprieve for years as well as a children’s legal support charity, Just for Kids Law, and her own grant-making trust, Antigone.

In March 2014, she was appointed Chancellor of the Open University. Martha co-founded and chairs Luckyvoice, revolutionising the karaoke industry. She chairs MakieLab, she is also on the board of Marks & Spencers and the Women’s Prize for Fiction, whilst being a member of the 30 Percent Club that aims to get more women on boards and supports women in business and technology. In 2013 Martha was awarded a CBE.

Ever since I was diagnosed with Guillain Barre Syndrome in 2011, I have wanted to try and use the horrendous experience that I and my family and friends went through in a positive way. When I was first in recovery and trying to rebuild my life, I was quite negative and down on everything and didn’t really feel like I was going to be able to help myself, never mind anyone else. But through looking on the internet for further information on Guillain Barre Syndrome (GBS) I came across the work of a fabulous charity which is now known as gain http://www.gaincharity.org.uk

Gemma in Intensive Care

gain charity provide information, support and advice to individuals and their families who are affected by GBS and other associated autoimmune disorders and also help to provide awareness and further research into causes, treatments and preventions.

Through finding gain, I had not only found a way of helping myself; through having access to information etc, but also gave me a way to try and turn my experience back to a positive. I got in touch with them asking if there were any ways I could help or be of use to them. I was told about the helpline that is open 24/7 and is manned totally by volunteers, a lot of whom where GBS survivors like myself, or where relatives of people who had gone through something similar.

I loved this, as it wasn’t a case of doctors or medical professionals talking to you in a clinical way, this was people who could show true empathy with others about their situations. I had my first day on the helpline a few weeks later, and although I initially found it quite emotional, and difficult, it gave me a real sense of how much I had actually achieved and how much I had actually been through. Speaking to people over the phone who where at similar stages that I was at 6 months or so earlier was so surreal but I loved that I was able to offer some support and in some cases even advice on things that I had found useful or not when I was in hospital.

Gemma supporting ‘gain’

Another form of help offered by gain is organising hospital visits if requested. I in particularly love this part, as I know how isolating, overwhelming and traumatic it is being stuck inside your body, often in agony and unable to move or communicate effectively. In my case I felt like it was never going to end and thought I would always be at that low point. But through myself and others going into to see sufferers, showing them that there is life after GBS. Symptoms usually plateau and then things usually do improve, even if in some cases, like mine, it means that things are slightly different to how they where before. I had so many lovely messages and thanks from people who I have personally been in contact with through this, I am so proud and happy that I can be even the tiniest bit of help to them

As GBS and other associated disorders can affect individuals so differently, there is such a wide range of severity that they can take. In my case my worst was being completely paralysed and in intensive care for weeks, unable to even swallow or even close my eye lids, but as crazy as it sounds I now know how lucky I actually was. Things can always be so much worse, as the disorders are things that an be fatal in some cases. And even though I have been left with disabilities and complications as a result of everything, I am thankful and grateful that I am still here and now I am able to help others. I have so much amazing support from the best family and friends, who also have done their bit by raising money for gain, by doing crazy activities, running marathons and holding events. Charities such as gain do such an amazing job, but could always do more, if there were more funds available to them.

Many of us know what it is to be older, or to have a disability, because it has happened to us or to someone close to us. The Disabled Living Foundation (DLF) is a national charity providing impartial advice, information and training on independent living since 1969. The DLF website is a valuable resource for sourcing equipment and providing options to enable people to continue living independently at home.

This Fund will help people find out about the resources available to keep them independent, and to help them make choices. Its purpose echoes Alf’s vision, in his own words, “adding life to years” rather than just years to life.

Known as the ‘quiet revolutionary’, Alf Morris, who died in 2012, became MP for Wythenshawe, then the world’s first Minister for Disabled People and later Lord Morris of Manchester. A man of purpose and intent, Alf was a true social reformer who made a genuine and enduring difference to the world around him. His achievements included the passing of The Chronically Sick & Disabled Persons Act (1970), the first to recognise and give rights to disabled people. Adapted as a template by other nations, it transformed the lives of millions of disabled people in the UK and worldwide. And his legacy lives on.

“DLF’s mission to help older and disabled people live independently at home has long been my priority of priorities. I believe there to be no worthier cause, nor one which makes such a tangible difference to so many lives.” The late Alf Morris who had links with the DLF from 1969 and was its longest serving Vice-President, remaining active in that role until his death in August 2012.

In support of the fund, the Alf Morris Lecture; Daring To Care: The Enduring Legacy Of Alf Morris Through The Eyes Of Sir Harold Evans, takes place at the Shaw Theatre, Euston Road, London at 7pm on Tuesday 10 March 2015

Sir Harold Evans

The inaugural Alf Morris Lecture will be delivered by renowned journalist, historian, writer and social commentator, Sir Harold Evans. Taking as its theme the issue of securing an independent and dignified future for our ageing population, the lecture covers one of the key debates in May’s General Election.

Sir Harold is no stranger to controversy. His distinguished career includes a 14 year stint as editor of the Sunday Times where he uncovered the thalidomide disaster and exposed Kim Philby as a Soviet spy. He championed a style of investigative journalism that brought stories, scandals and social issues to public attention and his powerful influence changed the way civil cases were reported in Britain. Now based in New York, Sir Harold is making a rare trip to the UK.

A personal story as well as a lecture, Sir Harold will share experiences and memories of his friendship with Alf Morris which began at Brookdale Park School in Manchester (where he was labelled ‘Poshie’ by Alf as he was the only boy in the school whose father owned a car) and was strengthened by their mutual quest to campaign for the victims of thalidomide.

Tickets for the Shaw Theatre, Euston Road London, on the evening of Tuesday 10 March 2015 start at £25 with concessions available. Guests can choose to attend a drinks reception before the lecture at 6.00pm and there will also be a celebratory dinner afterwards at 8.15pm in the Pullman St Pancras hotel (tables still available) with all monies raised donated to the Alf Morris Fund for Independent Living.

As people get older, many think of downsizing. With the ageing population, are builders really taking on board the needs of the ageing market? Is the construction industry fully aware of the need for accessible housing and does it have the knowledge to build properties that are accessible?

Regulations now require that all new-build properties have level access to the front door and a downstairs accessible toilet. A friend recently purchased a new build house, which does comply with the regulations but once you get past the downstairs toilet there are a set of steps to negotiate, which really negates the planning of the toilet and front access!

Access for all should be a key consideration for new-build houses. Properties that are adapted for wheelchairs can fetch a premium as they are few and far between. We recently experienced two major leaks in our house and it was suggested that we move out and rent for a couple of months to allow the builders to repair the property. I am a wheelchair user and the nearest adapted rental property that we could find was 25 miles away which was an impossible option with family commitments.

The issue is highlighted by the recent problems with ‘bed blocking’ in hospitals; partly attributed to some elderly patients being unable to return to their homes, which have become unsuitable for their needs. This can result in elderly patients being placed in nursing homes, miles away from the support of family and friends.

Many elderly people lose their mobility and need to rely on wheelchairs or walkers to move around. To move house can be an extremely stressful event in the life of an older person; therefore if new build properties are designed for all, to include the needs of the less mobile, this will enable them to stay independent for longer, which will in turn lessen the pressures on the looming housing crisis.

There are several basic factors that should be considered when building a new property to allow someone to stay independent in their property for longer.

Ramped, level access and level thresholds for all doors and widened doorways, to accommodate wheelchairs, should be incorporated where possible. The installation of a wet room ensures that a bathroom is easy to adapt with the addition of a shower seat and grab rails. Installing toilets to a reasonable height, not too low, can make it easier and safer to get on and off the loo as you get older. Staircases should have a deep steps and hand rails for maximum support and safety.

Stair lifts or through floor lifts can make the difference to someone remaining independent but these can be added as the need arises Grab rails, alarms, door chains and locks to keep residents safe, can all be added as they are required. Your local GP should be able to refer you to an Occupational Therapist who can assess your needs to ensure that you can remain as independent as possible in your own home.

If you do need to move or downsize as you get older, there are a number of possible housing options to consider:

Retirement Apartments:

Buying a property within a retirement development gives you the security and peace of mind of a house manager who oversees the running, maintenance and security of the development. Different levels of care can be organised, depending on the property that has been purchased. Retirement developments offer the option of an active social life but if you prefer your own company, you have the privacy of your own home.

Sheltered housing:

There are many different types of sheltered housing schemes available. Each scheme usually has between 20 and 40 self contained flats or bungalows which are available to buy or rent. Many schemes have community areas and run social events for the residents. Some schemes will have a warden and all schemes should operate a 24 hour emergency help through an alarm system. Extra-care schemes are available which provide meals and personal care to allow you to stay in your own home for longer.

Cohousing developments:

Cohousing is a community which is founded and run by residents. It is a way of combating the loneliness and isolation that many people experience today and can be created using empty homes or by building new. Each resident has a self-contained and private home within a household but residents come together to share meals, activities and to manage their community. Households can usually sign up on a social housing, leasehold or freehold basis. Accessible housing within a cohousing community would however depend upon the individual development.

Further information and advice on housing needs for the elderly can be found at the following websites:

Following a horse-riding accident almost twenty years ago, which left me Paraplegic, I was admitted to Salisbury Spinal Unit where I spent seven months undergoing my rehabilitation.

I cannot fault the care that I received there but obviously it was an extremely difficult and traumatic time in my life. One of the hardest things about being in a hospital unit for a long period is the lack of privacy. I felt that there was nowhere to go, nowhere to hide when you just needed some time to yourself, unless you locked yourself into a bathroom, which I remember doing on many occasions. My husband and I did find a small farm track at the back of the hospital that led to a farm gate overlooking a field, and we would sometimes escape there, but it was not somewhere that I would feel comfortable going to on my own, especially in the very heavy cumbersome Carters wheelchair that I was given for the duration of my stay.

At a recent visit to the spinal unit, I had the very great pleasure of visiting Horatio’s Garden, a beautiful and restorative garden that has been built within the grounds of the Spinal Unit for patients whilst they are resident at the hospital. It is a place that offers a retreat and a sanctuary for patients and their family and friends, to get away from the institutional and sometimes claustrophobic environment of the wards. It is somewhere calm and beautiful to go when you need to find some personal space.

Horatio’s Garden was built to commemorate the life of Horatio Chapple, who was tragically killed by a polar bear on an expedition to the Arctic in 2011 at the age of just 17. Horatio’s Father, David, was a spinal surgeon at Salisbury Hospital and Horatio regularly volunteered at the spinal unit during his school holidays. Horatio and David came up with the idea for a garden and Horatio drew up a questionnaire to find out what the patients wanted. After his death there was an outpouring of love, and goodwill and donations flooded in to create the garden – a fitting tribute and legacy to Horatio.

Horatio’s Garden was designed by Cleve West, winner of the Best in Show at Chelsea in 2011 and 2012. Cleve had experience of the spinal unit because his best friend had been a patient there. Cleve used Horatio’s questionnaire as a starting point for designing the garden; he consulted the staff at the spinal unit and used a wheelchair and a hospital bed to get a patient’s perspective. Horatio’s Garden was opened in September 2012.

The Horatio’s Garden Charitable Trust is run by volunteers. The trust raises funds by selling beautifully considered gardening products and gifts through an on site shop. Local artists work with the trust to design and decorate the beautiful giftware items it sells, which helps to give the shop a unique identity. Regular events and activities for the patients take place within the garden. The trust hopes to eventually roll out Horatio’s Garden to other spinal units across the UK.

Horatio’s Garden is, quite simply, stunning. It has a sense of peace and calm and offers a sanctuary for patients and their families. A stone-wall in the shape of a spine runs across the middle of the garden, which has raised beds with tall scented willowy flowers, create quiet areas and privacy for the patients. Birdsong throughout the garden lifts the spirit and the view out across the rolling hills calms the soul. I know that if I had had Horatio’s Garden available to me during my stay, it would have been my escape and my sanctuary.

MS is a complex disease andanyone who has been diagnosed or has a family member or friend with the condition will want to have a better insight into how it will affect them. Understanding any medical condition is always the first step forward in accepting the diagnosis. The next step is learning how to manage the condition and where to go to find support and information.

Multiple Sclerosis is a neurological condition which affects around 100,000 people in the UK alone. Multiple Sclerosis is the Latin name meaning ‘multiple scars’, which are otherwise known as plaques or lesions. MS affects almost 3 times more women than men and it is normally diagnosed between the ages of 20 – 40 years, although it can affect younger and older people too.

MS is a condition of the central nervous system, causing damage to the nerve fibres which can cause a range of symptoms. In MS, the immune system which normally helps to fight off infections, mistakes the myelin, which is the coating around the nerve fibres, for a foreign body and attacks it. This damages the nerve fibres leaving the scars known as plaques or lesions.

This damage can disrupt messages along the nerve fibres and the resulting symptoms will depend upon which part of the central nervous system is affected.

MS is complex and symptoms vary and may affect vision, balance, bladder, bowel, speech and memory. It can also cause tingling, numbness, dizziness, fatigue, stiffness spasms and mood swings.

There are four different types of MS, each type affect the sufferer in a unique way:

-Relapsing-remitting MS which is the most common form where sufferers experience a period of active symptoms, followed by periods that are symptom free.

-Secondary Progressive MS: Relapsing-remitting MS often develops into Secondary Progressive MS 10 – 15 years after initial diagnosis. Once diagnosed with secondary-progressive MS, people will notice a change in the pattern of their disease. While some acute attacks and periods of remission may still occur, they happen less frequently, recovery is less complete, and symptoms become chronic, gradually worsening over time

-Primary Progressive MS: The more serious form of the disease which gradually worsens over time.

-Progressive-relapsing MS: The least common type of MS which like Primary Progressive MS is characterised by a gradual worsening over time but sufferers with this type of MS will also experience active attacks and remissions.

Although as yet there is no cure for MS, medication can help to control the disease. Many people with MS find it useful to actively manage their heath with exercise, diet, meditation, managing their levels of stress and complimentary and alternative therapies.

How would you describe the smell of a rose to someone who has never had the ability to detect odours?

As a person who has always had the ability to smell or taste, have you ever considered what it might be like to lose these senses?

Fifth Sense is a new charity set to support sufferers of taste and smell disorders. Anosmia is a complete loss of the sense of smell. It can be caused by sinus or nasal disease, head trauma, Parkinson’s and Alzheimer’s disease, viruses and other causes.

Duncan Boak lost his ability to smell 10 years ago, at age 22, as a result of a head injury. His loss of smell took away his enjoyment of simple everyday pleasures such as the smell of dinner cooking, the scents of summer or an autumnal countryside walk. He established Fifth Sense to provide support and advice to sufferers of smell and taste disorders and raise awareness of such conditions, and in the longer-term generate funding for research into potential treatments.

The Fifth Sense vision is for the senses of smell and taste to be seen as essential to our quality of life, health and wellbeing. To do this, Fifth Sense intends to play a leading role in educating society on the huge role that these senses play in our lives. Smell and taste disorder sufferers themselves are key to this effort, and Fifth Sense seeks to give them the confidence and knowledge needed to become the leading educators on the power of these senses.

The sense of smell is closely linked with memory; those with full olfactory function find smells can evoke certain memories; the scent of an orchard in blossom conjuring up recollections of a childhood picnic. The psychological impact of smell loss can be a reduced ability to form and maintain close, personal relationships, which can lead to depression.

“Smell impacts on our lives in so many ways,” says Duncan. “The impact of losing the sense of smell is not commonly understood, so sufferers receive little sympathy or understanding which can lead to isolation and a lack of confidence”.

“Fifth Sense has been created using the collective experiences of its members; we want to create a community for sufferers and to create awareness of the condition. Many doctors are simply not aware of the disorder and do not know where to refer patients.”

Fifth Sense is working with leading clinicians, researchers, and of course its members, to demonstrate the need for advances in treatment and research.

You can read more about Fifth Sense and how to support their work here

If you live alone and experience feelings of loneliness and isolation, The Silver Line helpline may be just what you need. It’s a phone line for older people living alone, designed to link you with support services in your local community. It is still in it’s pilot stages but, all going to plan, should roll out nationally on 25th November 2013.
Silver Line is the result of an article written in August 2011 by Esther Rantzen CBE. The SIlver Line website explains how Esther (who founded the children’s helpline ChildLine in 1986) wrote about the loneliness she experienced since being bereaved, and living alone:

“She was overwhelmed by the huge response from older people who shared her experience. In November 2011 she was invited to make a key-note speech at a conference, “Vital Connections”, jointly hosted by the Centre for Social Justice and the Campaign to End Loneliness. There she came up with the idea of creating a helpline in order to support vulnerable older people, sign-post them to projects and services, break through the stigma of loneliness and isolation, and tackle the problems of abuse and neglect.

An initial grant of £50,000 was pledged as “seed money” by the Department of Health. A pilot was launched in November 2012, funded by Comic Relief.” (Extract from The Silver Line website)

More recently the service has received a 5 Million Pound grant from the BIG Lottery Fund.

The Silver Line’s Mission is to perform three functions to support older people:

a sign-posting service to link them into the many, varied services that exist around the country;

a befriending service to combat loneliness;

and a means of empowering those who may be suffering abuse and neglect, if appropriate to transfer them to specialist services to protect them from harm.

The signposting function will be undertaken by staff working from a very full database of local provision. The befriending function will be undertaken by trained volunteers.

The abuse and neglect prevention will involve calling upon the specialist support of organisations such as Action on Elder Abuse and Social Services, if appropriate.

If you’d like to know more, donate funds, offer to volunteer or find out when the service will be available in your area, contact